How do you eat an elephant?
One Bite at a time! I have finished my first big bite of the elephant, in that I am done with my weekly infusions, have successfully been checked out by "the team" and have picked up my one-month's supply of Ibrutinib. I do not have to return to Houston until Christmas day. I am officially in Phase 2 of the trial. Woo Hoo!!
This new phase simply consists of once monthly infusions and daily Ibrutinib until I reach remission. I will be checked for remission every two months starting December 26.
While at MD Anderson yesterday in between cardiologist, oncologist, research team, labs and nutritionist, I spent some personal time learning about a small part of my upcoming future. I ended up in the beauty and barber shop asking about wigs and scarfs and such. My eldest son, Jordan, has the most gorgeous, long hair and if I am not dying the grey out of mine with a darker shade, he and I share the same color :) Jordan very selflessly and with complete seriousness, told me he would cut off all his hair and give it to me for a wig. I know he was serious and I was ready to accept his gift. His gesture was a true reflection of his bold character. What I learned at the beauty shop, however, has unfortunately curtailed this offer. Human hair is not recommended for cancer patient's wigs due to the bacteria potential. It also apparently takes 2-3 people's hair to make one wig and the starting cost is around $3,500! I think scarfs will work just fine, or maybe I will just get a fun purple wig just for kicks LOL.
While I was in the beauty shop, I met a young lady who was there for her "big shave." It's funny, this may sound like a delicate subject, but when you wear the hospital wristband, required by all patients who walk through MDA's doors regardless of the reason, and you meet another person wearing a matching band, there is an unspoken green light to ask all the tough questions. I asked this young gal point blank if she had any ideas or suggestions for me; she glanced at my wristband and was completely candid and raw with me. I learned that exactly 14 days from the start of her chemo her hair fell out. Given this, she strongly suggested that I start cutting my hair now, trying out different styles and having fun with it while I still could, then cutting it into a super short, rocker-chick style just before starting what she and I both laughed and called "big" chemo. She told me she did it this way and she felt it was far less emotional. She was awesome; beautiful inside and out. She was embracing her new beginning and was a true inspiration. I am going to take her lead and get a new style. I figure I have maybe 2-3 new styles to go before the rocker cut!
I have felt good these last few days since getting out of the hospital. Today was my first day back at work since falling ill last week and I felt extremely accomplished. I am truly excited to have my "normal" life back for this month. No doctors, no infusions, no hospitals, no pokes or tests, no dyes, scans, nuclear medicine, radiographs or scopes down my nose; no white lab coats or needles, no smell of rubbing alcohol or latex, no "take a deep breath", no "big stick" IV's, no missed airplanes, late flights or hotel beds, no being without my family and friends. I am so thankful the thought of waking up next to my husband, petting my dog, drinking my coffee, working my job, seeing my family and talking to my friends. These things are not trivial, this is not boring and I do not need more to fulfill me; these things make for an exceptional life!
As always, I thank you all for your continued thoughts and prayers. I love hearing from you, I appreciate your texts, cards, emails and calls.